Life According to Sam': Mom's research may be key to son's survival

When we first meet him, Sam Berns is a fairly happy eighth-grader living outside Boston, interested in Legos and science; he dreams of joining the marching band when he starts high school. But he is 13 going on 90, coping with a rare genetic disease (there are believed to be fewer than 300 reported cases worldwide) called progeria, which bizarrely and cruelly ages and weakens its young victims. Sam has reached the usual life expectancy for those with the disease; there is no cure.

As such, the absorbing and deeply inspiring “Life According to Sam” (airing Monday night on HBO) has the makings of one of those documentaries that can — like so many films and long-form feature articles in its genre — become only a weepy, front-row seat to a family’s heartbreak.

But “Life According to Sam,” directed and produced by the Oscar-winning, Washington-based filmmakers Sean Fine and Andrea Nix Fine, is not here to depress us. The film is as much — or maybe more — about Sam’s resiliently proactive mother, Leslie Gordon, as it is about Sam. When faced with her son’s prognosis, Gordon, a research physician, decided with her husband, Scott Berns (a pediatric ER doctor), to start a research foundation and attempt a clinical drug trial on 28 children who have progeria — including Sam.

Over several years, the children are given a cancer drug, Lonafarnib, which might slow progeria’s effects enough to significantly prolong the children’s lives.

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There is so much at stake in “Life According to Sam” that some viewers might not be able to endure the worry and fear. Sam is instantly charming and, like so many children with terminal illness, he articulates what he knows the adults around him — including the rock star Dave Matthews, who is among Sam’s admirers — most need to hear. “I didn’t put myself in front of you to have you feel bad for me,” he tells the camera. “I put myself in front of you to let you know that you don’t have to feel bad for me.”

As such, the film ably transitions to and from its parallel stories of uplift and defeat. The children in the drug trial come with their parents from as far away as Pakistan and India, hinging their hopes on Gordon’s exhaustive trial. She and Berns, in turn, invest their hopes in their remarkable boy’s optimism and joy — even as the study is rejected by two medical journals because the researchers broke form and didn’t test a placebo along with the drug.

“Life According to Sam” is remarkable in the ways it mimics Sam’s guiding principle and spirit. Although it has a lot to tell us about the science of genomes and the rigors of FDA approval, it doesn’t necessarily want you to feel sorry or outraged or moved to act. It only wants you to feel how fragile yet wonderful life can be. Do yourself a favor and come hang out with Sam for a while.

“Life According to Sam”, 95 minutes, airs Monday night on HBO, with encores.